Rick’s Prostate Cancer Blog and ProtonInfo Group

Our ProtonPals web site was featured in web log that I’ve recently found called Rick’s Prostate Cancer Blog.  Rick Otey, on hearing about our web site from his friend Chuck, contacted me about some information about M. D. Anderson.  Chuck started his treatment at the MDACC PTC in early March.

This morning Rick wrote about The First Six Steps to Take When You Are Diagnosed.  What to do when your doctor utters the four words that will forever change your life: “you have prostate cancer.”  But hopefully it won’t be like what I experienced, i.e. when the nurse calls to give you the news but can’t put it in any context, except make an appointment and come in for a consult.  Thanks Rick.

 http://www.ricksprostatecancer.blogspot.com:80/

The author of the note on the six steps is Fuller Jones who presented them in a reply to the wife of a newly diagnosed husband.  Fuller was treated some years back by the Loma Linda Center and owns a Yahoo forum at the link listed below. Check out his site for more information and support.  Thanks Fuller.

http://www.groups.yahoo.com/group/protoninfo.

PalJoe   3/12/2008

March Support Group Meeting Notice

The March support group meeting will be held on Wednesday, March 26th at the Proton Therapy Center Room 2008 at 1 p.m.  The featured speaker will be Mary Hughes, a Psychiatric Clinic Nurse Specialist who specializes on issues related to sexual dysfunction and intimacy issues - especially as it relates to cancer and treatment. The topic, “You’ve Lost that Loving Feelin”.    She is an excellent speaker and therapist - so be sure to bring your questions or send them into Sloane Caskey. srcaskey@mdanderson.org

Click on this link to see to see the flyer about the March Support Group Meeting .

Meeting Summary Feb. 27, 2008

The regular support group meeting was held at the M.D. Anderson Cancer Center (MDACC) Proton Therapy Center on Wed 2/27/2008.  Lorianne Classen, a specialist from the Patient Education group presented a “New Patient/Family Orientation Class” to the group and called our attention to the vast programs and resources at the center.  Those resources we may need and those we simply want to know about.  

The keepers or take-aways, as I like to call them are:

  • The MDA is very large organization and has a vast number of places where you “interface” or experience the system and this presentation provides and introduction to them.  From locations of clinics, parking lots, support teams, restaurants, transportation, travel, and accomodations to the various programs and clinics at the center.
  • The MDA handles 4000 outpatient appointments per day.  A visit to the Mays Clinic for your follow up PSA tests will demonstrate the sheer number of patients being handled, and courteously and efficiently I’d like to add.
  • There are many ways to access the Internet to get more information about the center and this presentation will help you find your way around.
  • One of the valuable features of the Internet web site is the one dedicated to you myMDAnderson   - https://my.mdanderson.org/   It’s a secure site that I’ve used it to confirm appointments, check billing and to send messages.

Attached you’ll find the 4 page presentation in PDF format. Patient Introduction. The use of portable data format (PDF) seems to be the practice at MDACC and I use it also since it’s more compact than other formats for documents and presentations and should be more readily readable by a wide variety of computers.

paljoe  3/4/2008

Support Group Meeting for Wed. Feb. 27th

ProtonPals:

Sloane Caskey requested that we forward the notice (Educational Group Meeting) for Feb’s support group meeting featuring Lorianne Classen as the speaker.  Also to remind newcomers and family that these are held on the 4th Wednesday of every month. 

In gratitude,
Joe

LiveStrong, Enjoy Life and Excercise

Just received a note from one of our ProtonPals with news of his world travels and also how he chose proton therapy and the MDA PBTC.   Clif’s activities reminds me of the yellow Lance Armstrong wrist band that I’m wearing and how I’m not following it’s directive.   The band says LiveStrong and is part of Lance’s foundation campaign to get support for the  $3 billion Proposition 15 that was approved by Texas voters. 

I found out about proton therapy from the internet.  When I was first diagnosed in Feb 2007 I went into the usual panic mode which included reading books, visiting a three doctor multidisciplinary team at my alma mater, Duke University,and visiting at John Hopkins.  Up to that point there had been no mention of Proton Therapy.  Although I signed up for surgery at Ohio State, I guess I still wasn’t convinced and continued to research on the internet.  That’s where I came across Loma Linda, proton therapy and “Proton Bob”.  I spoke to the folks at Loma Linda but there was a longer wait than at MDAnderson so I flew to Houston to consult with Dr. Lee.  He felt I was a good candidate and recommended two hormone shots with the treatment.  I finished protons in July 07 and so far so good with minimal side effects. Dr. Lee emphasized the importance of exercise and I follow a daily walking and exercise regimen. I’m presently in the south of Chile for two months of their summer.  This is a beautiful part of the world with active volcanoes and beautiful lakes and mountains. The end of March I will be skiing in Colorado for a week and back to Houston for my 2nd follow-up visit in April.  That’s all for now.  My best wishes to all.
Clif T. 

Support Group Meeting at the Proton Therapy Center 1/23/2008

Dr. Andrew Lee spoke at the support group meeting on Wed. Jan 23rd.   Over 30 persons were in attendance.   Several “graduates” attended.   Dr. Lee responded to several questions that had been submitted, and took an equal number of questions from the floor. 

Here were my “keepers” from the meeting.  If you have additional items please post them here as a comment  to this note or let me know and I’ll circulate to the newsletter mailing list.

1)  Within the past 3 weeks I’ve e been contacted by 4 recently diagnosed men who were considering taking the proton therapy treatment.  Sadly I think I did a disservice to 3 of them because I didn’t ask about their pathology results since I didn’t want to pry.  As they called in for appointments or went in for consults they found they were not candidates because of a previous medical issue(lukemia in remission),  stage T4 diagnosis and a high Gleason score.  The fourth man met the criteria and has been scheduled for a consult.   Here are the  criteria used to screen candidates as Dr. Lee relayed them to us on Wed.   Cancer patients who have a PSA greater than 20, a Gleason score of 8,9 or 10, T stage of T3d and T4,  nodal involvement, or a hip replacement are not candidates for proton therapy.

2)  After 18  months of operation the proton therapy at the MDA Proton Center is being well tolerated and results are above the expectations of the medical team.   It’s still much too early to publish results but Dr. Lee is optimistic and expecting that the results will be better than what’s been previously published.  Two key factors that are driving this improvement  are 1) the control over targeted tumor area is more precise, and  2) the dosage is higher than used a few years ago. 

3) “Graduates” were cautioned that care should be taken in having a colonoscopy and  Dr. Lee recommended that we wait a year after completion of treatment.   Since proton therapy is relatively new, and not many colonoscopists are versed in the therapy, some of their actions may cause inadvertent injury to the rectum as they take biopsies.   If you have any questions please contact Dr. Lee or Dr. Choi.

4) There was considerable amount of discussion over PSA results.    Summarizing as best I can without having had Dr. Lee review these notes here’s what I heard.  The PSA nadir (lowest reading) is reached on average around 18 months after completion of treatment.   There is no absolute number that one should look for after treatment and having a high PSA (called PSA failure) is not specific to cancer.    There are many things that will cause PSA readings to increase like manipulation during an examination, inflammation, bacterial prostatitis, urinary retention,  exercise like riding a bike, and ejaculation.  ( there is an article in this web blog about activities  you should avoid before having your PSA tested, including a DRE as some urologists have done prior to drawing blood). 

http://protonpals.net/wp-admin/post.php?action=edit&post=46

5) New PSA serum tests.  The current PSA test was developed as a screening tool but now also commonly used to track patient recovery.  It’s not necessarily a marker to cancer and more specific serum markers tests like EPCA and EPCA-2 developed at John Hopkins are waiting for FDA approval.   The method is not proven and much testing remains to be done.  Quoting Dr. Patrick Walsh, “EPCA-2 could help determine which men with abnormal PSA levels have prostate cancer. But it’s possible that EPCA-2 may even replace PSA one day as the screening test of choice.”

http://urology.jhu.edu/newsletter/prostate_cancer_discovery_91.php

6) There were quite a few questions the hormone therapy but I don’t have the specifics to report.

7) The therapy(pencil beam or spot scattering) for the 3rd gantry was been recently approved by the FDA and the  equipment is being commissioned  for clinical use and will be used starting this summer.  Hitachi, the equipment manufacturer for the M.D. Anderson Proton Therapy Center received the approval and will undoubtedly implement this therapy in other locations, however I believe that 3rd gantry was where it was developed and the tested.

jelandry@sbcglobal.net

Activities that will elevate PSA

 SOURCE: BOB Tales - Monthly Newsletter to Members - October 2007 Bob Marckini, Editor.

IMPORTANT NEW FINDING FROM JOHNS HOPKINS?

I received a bulletin though my Google Alerts last month indicating that Johns Hopkins reported a significant new finding that, “should save men with early prostate cancer from making any irrevocable decisions too hastily.”

And, that new finding? Having sex within 72 hours of your PSA test can produce a false reading.

Hello… Isn’t this old news? We’ve been talking about this for five years, along with the fact that there are some conditions that can cause false readings for up to 6 weeks. It’s in my book, in two places.

This information was published in the August 1998 Journal of Laboratory Medicine. Here are some other things that can cause false readings, from page 190 in my book.


Condition/Manipulation Effect on PSA Increase Persists
Acute bacterial prostatitis 5-7 fold 6 weeks
Acute urinary retention 5-7 fold 6 weeks
Exercise - bicycle 0-3 fold 1 week
Prostate Biopsy Very variable 6 weeks
Prostate massage Variable 6 weeks
Ejaculation Variable 3 days
TURP Very Variable 6 weeks

Zapping Cancer Cells

In a bunker the size of a football field, a Houston research center will blast tumors with a colossal proton generator.

FORTUNE Magazine

By Philip Siekman, Fortune

November 6 2006: 3:53 PM EST

(Fortune Magazine) — It’s called a gantry, and it’s downright eerie. An assemblage of steel and cables mounted some 16 feet above the floor of a concrete chamber, it’s more than 30 feet in length and width, with ends bracketed by 17-foot steel wheels resting on double rollers. The gantry weighs 190 tons, about as much as a diesel locomotive, but when it begins to revolve there is neither creak nor hum. As it rolls counterclockwise a bit past the halfway point, stops, returns to center, and then rotates the other way, it could be a “Star Wars” battle cruiser maneuvering soundlessly in space.

Yes, we’re in Houston - not at NASA, but at the University of Texas’s M.D. Anderson Cancer Center. An equipment test is underway at its new proton radiation therapy center. And though the huge gantry is not a warship, it carries a weapon. While more new wonder drugs like Gleevec are still in the pipeline, proton therapy is a proven fighter in the war against cancer.

Oncologists have long known that substituting proton radiation for the X-rays now used to treat about half of all cancer patients would do less harm to normal tissues and organs and more damage to malignant growths. That, says Dr. James Cox, M.D. Anderson’s chairman of radiation oncology and medical director of the proton center, would mean more cures.

The problem has long been cost. Both the equipment needed to generate a proton beam and the building in which to house it are extraordinarily expensive. Indeed, by the time the first patient arrives next January, the cost for the new Anderson Center will have mounted to some $130 million, making it probably the most expensive single-treatment medical facility ever built. But in a radical departure from customary practice, it is being paid for not by taxpayers or philanthropists but by private investors.

The science of protont herapy

In case you slept through high school physics, protons exist in the nuclei of atoms and have electrons orbiting them. For radiation therapy, physicists separate positively charged protons from hydrogen atoms by stripping off the negatively charged electrons. Powerful magnets bend the proton stream into a circular path and then control it as the stream is accelerated to near light speed inside either a cyclotron or, as at Anderson, its higher-energy cousin, a synchrotron. The speed of the resulting beam - and thus its energy - is measured in electron volts. The higher the electron voltage, the heavier the punch when the beam hits a tumor in the patient’s body. Anderson’s system will generate up to 250 million electron volts, enough to reach tumors in all but the most obese patients.

Disrupting death

When protons strike a tumor, they have about the same impact on the cancer cells as X-rays. To greatly simplify a complex biophysical action, the energy from both disrupts bonds of molecules in the cell, leading to breaks in its DNA strands. If the cell cannot repair itself, it dies, or at least loses its ability to replicate.

The difference in the effectiveness of protons and X-rays lies in what takes place before and after radiation reaches the tumor. X-rays release much of their energy quickly after penetrating the skin, disrupting the molecules of healthy tissue and organs.

Protons can be managed so that they release most of their energy only when they get to their target. Also, unlike X-rays, which pass completely through the body - in one side, out the other - protons go no farther than the tumor, sparing everything behind it. More energy reaches the cancerous cells, so more damage is wrought by each burst of radiation. Side effects caused by the irradiation of normal tissue in front of and behind the tumor are, while not eliminated, greatly reduced.

Proton therapy is most effective when directed at single, well-defined tumors, especially ones close to sensitive nerves and organs, such as those growing in the lungs or prostate. Anderson estimates that the therapy can be used on 75 percent of those suffering from prostate cancer and that it will greatly reduce, and possibly eliminate, the incontinence and impotence that frequently follow other forms of treatment. (If a cancer has metastasized, the protection that proton therapy offers healthy cells is muted. When a large area must be radiated, such as in treating breast cancer, or when the whole body is radiated, as in leukemia and most cases of lymphoma, X-rays remain the preferred treatment.)

The high cost of fighting cancer

For decades U.S. and foreign universities have occasionally used their research cyclotrons and synchrotrons to treat cancer patients with protons. Harvard, for example, treated 9,116 patients before it shut down its aging equipment in 2002.

Because their equipment is limited in power and flexibility, universities use it mostly to irradiate shallow tumors near the spine or brain, such as melanomas behind the eye, or to treat cancer in children, where there is always a risk that radiation damage to healthy cells will inhibit growth or lead to radiation-induced tumors decades later.

In 1990, California’s Loma Linda University, an affiliate of the Seventh-day Adventist Church, opened the first hospital-based proton treatment center in the U.S. with funding from the church and the National Cancer Institute and a synchrotron built by the Fermi National Accelerator Laboratory. Many radiologists and oncologists initially questioned the therapy’s cost and efficacy. During the 1990s, however, Loma Linda increased the number of patients it could treat and began reporting good results with reduced side effects.

Almost as important, it convinced Medicare and other insurers that they should cover the treatments. Currently Medicare reimburses clinics or patients $850 for the most complex proton radiation session, vs. $308 for the most expensive X-ray session. But the extra cost is offset because fewer expenses are incurred treating side effects, and the number of treatment sessions can be reduced. Anderson’s Jim Cox estimates that the bill for proton treatment of a lung- or colon-cancer patient will be in the $60,000 to $75,000 range - about the same as conventional treatments.

By the late ’90s many radiation oncologists had begun to recognize proton therapy’s benefits. Massachusetts General, the teaching hospital for Harvard’s medical school, decided to go ahead with the second U.S. hospital-based proton-treatment facility. The University of Indiana said it would build its own center using an existing cyclotron. (Both are now in operation.)

Oncologists at Anderson had also concluded that proton radiation would be a useful tool. However, Anderson was in the midst of a $700 million expansion of research and patient facilities; despite the advances, Dr. John Mendelsohn, Anderson’s president, knew that the Texas University regents weren’t about to dig up another $100 million or so for a single new therapy.

After the collapse of an agreement with Tenet Healthcare (Charts), the New York Stock Exchange-listed hospital operator, Mendelsohn went looking for another partner and found two: Styles & Co., a family-owned hospital manager, and Sanders Morris Harris, an investment bank. Working together, the two Houston firms put together a $30 million limited partnership that includes a group of individuals and two pension funds.

General Electric (Charts) is also an investor, but the big player is Hitachi (Charts), which is providing, installing, and from here on out maintaining all the proton equipment. Eager to get into what looks like an expanding global market that has been dominated by a Belgian firm, Ion Beam Applications, the Japanese are financing their entire share of the project.

Besides expensive equipment, machinery and computer systems, there’s the building itself. From the street it looks like a handsome if modest-sized one-story structure. That’s just the conning tower. The synchrotron and treatment cells are underground, where they occupy a concrete bunker the size of a football field. To shield people inside and out from a spray of neutrons that can be released when protons collide with anything, the exterior walls are three feet thick, and those around the treatment cells are a solid eight feet. Enough concrete was poured at the facility to build a 20-story office building.

Seed money

When treatments begin at Anderson in 2006, its synchrotron will create a proton beam that will, as needed, be magnetically diverted from a main transport line into one of four patient-treatment rooms or a fifth area used for research. In one patient area, reserved for such cancers as ocular tumors, the patient will sit in a special chair with his head held in a frame.

Each of three other treatment cells will contain one of those huge gantries, hidden from the view of anxious patients. Each gantry bears a nozzle that will shape the beam of protons aimed into the patient lying within its arc and constrained by a foam mattress molded to his shape.

During treatment sessions, technicians working remotely from behind thick walls will maneuver the supine patient into position by minutely adjusting the bed in six directions. That maneuverability, coupled with precise computer control of the gantry and beam, will enable them to home in on a tumor with an accuracy of better than plus or minus one spherical millimeter - about the diameter of a pencil dot.

While getting everything in place and the patient positioned could take up to half an hour, the actual blast of protons will last only 30 to 60 seconds. Anderson should have all its treatment areas operating by mid-2006, but it will be several years until the center has refined all the processes and can move enough patients through what will be 16-hour days to reach its full capacity of 3,500 a year.

Proton therapy is gaining more and more support from oncologists. Soon after Anderson gets operating, the University of Florida will open its proton facility, which was financed with public money and philanthropic contributions. Still more centers would be started if money could be found.

There is always the risk that the volume of patients planned for won’t materialize or that researchers might discover a pill that cures cancer or develop a less expensive radiation treatment. But the Houston partners, who say their investors will have their money back and then some by about 2011, aren’t concerned. They point out that cancer is not one disease but dozens or hundreds, making a single cure or treatment unlikely.

Dr. Cox believes that as cancer patients and their physicians begin to understand the benefits of proton radiation, he might have more people who want to come to his center than he will be able to treat. He says, “The investors worry about not having enough patients. I worry about having too many.”

Are you considering surgery? Get access to an expert.

Dr. Bach in an article in the WSJ notes that the average prostate surgeon in New York State performed fewer that 4 operations a year, 114 who did only one.   ” In other words, even though expertise is needed to deliver an important treatment that should have low complications and high success rates, there is nothing that ensures that men with prostate cancer can have access to such expertise.”

Why We’ll Never Cure Cancer

[Read more →]

The importance of having access to a skilled doctor

Why We’ll Never Cure Cancer

By PETER B. BACH
October 27, 2007; Page A9, Wall Street Journal

Recently the National Cancer Institute, the Centers for Disease Control and Prevention, and the American Cancer Society trumpeted a 2% annual decline in cancer mortality rates as proof that the progress we are making in cancer research is benefiting patients. I think they’re celebrating the glass being 1/50th full.

To be sure, scientists have made tremendous scientific advances in prevention, early detection and management of cancer. But these organizations should decry the inability of the health-care system to deliver these advances to the patients who need them. The gaps are glaring:

How good is your doctor?

 Prevention. In colon cancer, the No. 2 cancer killer, better understanding of the natural history of cancer has led to the development and validation of colonoscopy screening. The Centers for Disease Control and Prevention estimates that adequate utilization of colonoscopy alone could reduce the colon cancer death rate by 50%.
 

According to the government’s Agency for Healthcare Research and Quality, however, only four in 10 people who should be screened have ever gotten a colonoscopy or similar test to look for precancerous polyps — in part because doctors forget to recommend the test to patients who should have it.

Even for those who do get colonoscopies, the quality is uneven. Not all colonoscopists (doctors who perform colonoscopies) are good at finding the precancerous polyps in the colon.

In a study published this year in the American Journal of Gastroenterology, researchers reported that the most-skilled colonoscopists found pre-cancerous growths in 40% of the patients they tested, but the least-skilled found polyps in only 15% of those screened. When it came to the most concerning types of polyps, the most-skilled doctors found more than three times as many of them. The authors concluded that the most important predictor of whether a patient actually benefits from having a colonoscopy is the ability of the doctor who does the test.

 Early treatment. Consider prostate cancer, the No. 2 cancer killer of men in the United States. Randomized studies show that men with early prostate cancer live longer if they have surgery. New techniques and technologies have led both to steady reductions in complications and substantial improvements in cancer control. Here again, this progress is not reaching all patients.
 

Five years ago, my colleagues and I published a study in the New England Journal of Medicine showing that only very experienced surgeons actually achieve the low complication rates that all patients deserve. This summer, a study in the Journal of the National Cancer Institute showed that experienced surgeons who have done 250 or more prostate surgeries are also very good at achieving cancer control — almost twice as good as those surgeons who have performed relatively few operations in their career (around 10 or so).

If inexperienced surgeons were the exception, this would not be a big problem, as most prostate cancer patients would be getting the best medicine had to offer. But this is not the case.

In New York State in 2002, the average prostate surgeon performed fewer than four operations, and there were 114 surgeons who did only one prostate operation. In other words, even though expertise is needed to deliver an important treatment that should have low complications and high success rates, there is nothing that ensures that men with prostate cancer can have access to such expertise.

 Personalized, targeted treatments. In breast cancer, the No. 2 cancer killer of women, Genentech’s Herceptin drug is emblematic of the progress that has been made towards personalizing treatment. For women with a specific abnormality in their cancer, Herceptin can double the cure rate by “targeting” a specific protein that was discovered to play a key role in cancer cell proliferation.
 

Figuring out which women should get Herceptin is the key to personalizing this treatment, yet this is not being done as well as it should. At the American Society for Clinical Oncology conference meeting this year, we learned that about 10% of the time tumors that are reported to be positive, and thus should respond to Herceptin treatment, are in fact negative. There was another study suggesting that 20% of the tumors that the tests say are negative may actually still respond to Herceptin. So one of the most important advances in personalized breast-cancer treatment may be going to women it shouldn’t, and not going to women it should.

 Pain management. Scientific advances in this field are critical for many patients with advanced cancer, including more than 100,000 patients who die each year of lung cancer, the No. 1 cancer killer of both men and women. Every year, longer acting, easier-to-take pain medications with more favorable side effect profiles are approved and come on the market.
 

Yet, a study in the New England Journal of Medicine in 2000 reported that in our system, pharmacies don’t actually stock many of the medications doctors prescribe for cancer pain. The shortfalls are most profound in poor and black communities where lung cancer is also more prevalent. Three quarters of pharmacies in poor neighborhoods do not have adequate supplies of cancer pain medications.

In the interviews surrounding the announcement about cancer death rates, most observers argued that more spending on research was urgently needed, to build on the scientific advances that have been made. That’s right. We should also be spending more, much more, to ensure that scientific advances benefit patients.

When a new screening test is developed, we should make sure that patients find their way to doctors who can perform it. When a new targeted therapy is discovered, we should make sure the right patients get it. When a drug that can relieve a person’s pain is proven to work, we should make sure it is sitting on every pharmacist’s shelf. If we address these problems, we’ll have a real reason to celebrate.

Dr. Bach is a physician at Memorial Sloan-Kettering Cancer Center in New York City, and a member of the National Cancer Policy Forum of the Institute of Medicine. He formerly served as senior adviser to the administrator of the Centers for Medicare and Medicaid Services in Washington, D.C